Saturday, May 29, 2010

The name 'Lost Voices’ refers both to the fact that people who are severely ill with ME are generally not in a position to make themselves heard, and also to the way that the prejudiced denial of ME - as an ‘aberrant belief’ rather than a devastating physical illness – has meant that often others are incapable of actually hearing and seeing what is being said and shown - our voices drop into a void.

Art has the power to move people, and combined with documentation 'Lost Voices’ brings the situation more vividly to life.

'Lost Voices’ is primarily written by people affected by severe ME- whether as sufferers, carers or families - those very severely affected – house-bound or bed-bound - are represented.

The book is a high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour.

Wednesday, May 26, 2010

Long-term valacyclovir and/or valganciclovir subset-directed administration improved or eliminated CFS symptoms in Group A CFS patients, allowing them to return to normal life.

The present data are remarkable considering that these CFS patients had been ill for a mean of 4.8 years before antiviral therapy was begun. The mean duration of antiviral therapy for Group A CFS patients was 2.4 years. Both valacyclovir and valganciclovir were equally effective in single or multiple herpesvirus CFS subsets.

PS: Group A CFS patients have EBV, HCMV, and HHV6 in single or multiple infection without coinfection.

Group B CFS patients are similar to Group A, but with coinfections, tick-borne Borrelia burgdorferi, Babesia microti, Anaplasma phagocytophila, and/or adult rheumatic fever.

The fundamental stumbling block in finding a single diagnostic category most suitable for CFS/ME, whether in the Diagnostic and Statistical Manual for Mental Disorders (DSM) of the American Psychiatric Association, or the World Health Organisation (WHO) Handbook, or elsewhere, is that it contains, by definition, more than one term, each of which is unlikely to besatisfactorily accommodated within only one category.

Even if each component, M.E. and CFS, (whether one takes M.E. to be Myalgic Encephalomyelitis or Myalgic Encephalopathy), fitted neatly and exclusively into one category (for example, neurological), or another category (for example psychiatric), or if it appeared always in more than one category (for example neurological and psychiatric) but never in some other category at all, the terms must first be separated.

The problem is further complicated for Chronic Fatigue Syndrome because, even when separated from M.E., CFS comprises several heterogeneous conditions, each with a variety of organic and/or psychiatric causes, which could not be placed in a single category. Even if M.E. is taken to be a discrete illness with no subsets (and this is not universally agreed), it is possible that some patients may co-incidentally have an additional but unrelated psychiatric history, or concurrent psychiatric illness, that did not cause, or was not caused by also having, M.E.

Thursday, May 20, 2010

The quality of life of children with CFS/ME was profoundly reduced when compared to their healthy counterparts.

The mean illness duration of patients was 3.7 years. Sixty-eight percent of the children said that their illness developed quickly; in 88% illness had had an infectious onset. Only one child (4%) attended school full time, while 12 (48%) went to school part time, and 8 (32%) had home tuition only.

Aged just 32, Sophia Mirza lost her life to ME – the first time the condition was recorded as an official cause of death in the UK.

Here, her mother talks to Louette Harding about Sophia’s excruciating final years and the torment they suffered at the hands of a health profession that didn’t know how to treat her illness.

As a former midwife and qualified nurse, Criona Wilson says that if there’s one thing she knows about, it’s illness. ‘There’s a rhythm to sickness, to getting better,’ she says. When her youngest daughter mysteriously became unwell, she had a feel for the diagnosis. ‘Although I’d never nursed anyone with the condition before, looking at Sophia I said, “I think you have ME.”’

Eight years later, in 2006, Sophia Mirza’s inquest dramatically supported her mother’s instinct. The coroner ruled that the 32-year-old had died of complications due to myalgic encephalomyelitis, a landmark verdict in the UK.

A neuropathologist told the court that Sophia’s spinal cord was inflamed, with three quarters of her sensory cells displaying significant abnormalities.

Yet, as Sophia’s treatment by the medical establishment had underlined – she was forcibly sectioned for a spell in 2003 – many doctors handle ME (also known as postviral or chronic fatigue syndrome), as if it were a mental condition.

Children with greater exposure to organophosphate pesticides appear to have an increased risk of developing attention-deficit/hyperactivity disorder (ADHD), a cross-sectional study showed.

A 10-fold increase in the concentration of the most common dialkyl phosphate metabolites -- a measure of organophosphate exposure -- was associated with a 1.55-fold increase in the odds of having ADHD (OR 1.55, 95% CI 1.14 to 2.10), according to Maryse Bouchard, PhD, of the University of Montreal, and colleagues.

The relationship was not explained by gender, age, race/ethnicity, poverty to income ratio, fasting duration, or urinary creatinine concentration, the researchers reported in the June issue of Pediatrics.

"These findings support the hypothesis that organophosphate exposure, at levels common among U.S. children, may contribute to ADHD prevalence," they wrote.

Causality could not be established, however, and it is possible that the behavior of children with ADHD increases their exposure to pesticides.

"Future studies should use a prospective design, with multiple urine samples collected over time, for better assessment of chronic exposure and critical windows of exposure, and should establish appropriate temporality."

Sunday, May 16, 2010

Officers in the Northern Territory have received reports of the amorous kangaroo stalking residents in the Honeymoon Ranges near the township of Tennant Creek, including one woman on her morning walk.

"There was no doubt about what he wanted, the randy old thing," the woman told the Northern Territory News. "I turned around and saw this big kangaroo behind me, so I hastened my steps," she said.

"It was a huge kangaroo and quite intimidating."The woman said that she shouted at the animal, which was obviously aroused, but that it was persistent and only bounded off when other walkers approached.

Later that day a mother-of-three encountered the kangaroo at a night-time car race.

Tanya Wilson went to say hello to the animal when her friends warned her away.

"I thought it was strange that a kangaroo would come to such a noisy place, but I grew up around kangaroos so I went up to say hello," she said. "There I was having a nice chat to him when I heard others calling out to me, warning me to step away.

"I didn't take any notice of them because I didn't think I had anything to worry about. I thought he was just a cute, friendly kangaroo."

"Yeah, apparently he was quite aroused," she said.

One man said that he had tried to scare the animal away, but that it had punched him in the face.

Monday, May 10, 2010

Merck's Isentress fought the virus, XMRV, more powerfully than 44 other anti-HIV compounds tested against the pathogen in laboratory experiments, according to researchers from the University of Utah and Emory University. GlaxoSmithKline's Retrovir and Gilead Sciences's Viread also prevented XMRV from replicating, according to a statement from Emory Thursday.

XMRV was discovered in 2006 and has since been found in some prostate tumors and in the blood of people with chronic fatigue syndrome. Researchers say its relationship with both diseases is unclear, and European studies last year failed to find the virus in chronic fatigue syndrome patients. Tests of the drugs in patients with XMRV are needed, said Ila Singh, who led the research at the University of Utah's medical school."We will need to see the results of clinical trials before these drugs can be used in a clinical setting," Singh said in the statement.XMRV, like HIV, is a retrovirus that gets incorporated into the genome of the cells it infects. It may trigger cancer by locating in the cell's genetic material next to DNA that controls cell growth, disrupting those genes in a way that allow cells to replicate uncontrollably, Emory said in the statement.

The virus was found in 44 percent of men with the most aggressive form of prostate cancer, Singh found in a study publishedin September. XMRV turned up in the blood of two- thirds of a set of tissue samples taken from people with chronic fatigue syndrome and 3.7 percent of a group of healthy individuals, according to separate research published in the journal Science in October.

Isentress is the first in a new class of AIDS medicines that halt HIV by blocking an enzyme called integrase the virus uses to insert its genetic material into the nucleus of healthy immune cells. Merck won U.S. approval in July to sell the drug as an initial treatment for HIV patients. It was previously marketed only to patients who had failed all other therapies.

The research was published in the journal PLoS ONE, a publication of the Public Library of Science, a San Francisco-based nonprofit organization. The study was funded by Emory's Center for AIDS Research and the Department of Veterans Affairs.Glaxo and Pfizer Inc. combined their HIV-drug units last year, with British company owning 85 percent of the resulting entity, Viiv Healthcare.

Wednesday, May 5, 2010

We all know that the CBT fanatics have been lying about ME for decades. This time though, the Pinocchio specialists from the Netherlands have taken things to another level.

They have written a letter, attached as a PDF file, to Dr. Whittemore from the WPI, and they write some very interesting things indeed.

The Lancet, normally publishes their CBT rubbish without any hesitation, this time though, The Lancet has refused to publish the so called negative XMRV study.

They then offered it to the BMJ, the British Journal of CBT-ism, the Journal that was ruled for many years by Prof Wessely, and is still dancing to his tunes. So no surprise that they published this article.

However, before the article was published, the CBT fanatics from the Netherlands already knew that the American Institute did in fact detect the virus in some of the samples that were sent to them by the Dutch CBT fanatics. To then publish an article saying that the XMRV virus wasn't detected at all, was Pinocchio medicine at its best.

They should have at least mentioned the positive findings, even if they think, that it was caused by contamination, what else can they say when Pinocchio medicine rules their world.

The CBT fanatics however are so desperate to keep the millions coming for silly CBT that the article had to be published at any cost, and to deny the existence of this new virus.

I know that the GMC is investigating a silly case against Dr. Myhill, but it is very clear what they should be doing instead wouldn't you think ...

I hope for the British and the Dutch Pinocchio specialists, that none of them, nor any of their friends and relatives, will ever get ME, because then they will suddenly realise that they have been wasting millions on silly therapy, that they have wasted decades to NOT find proper treatment, and finally, they will be in for a huge shock, as ME is a shocking and very debilitating illness, which has got nothing to do with chronic fatigue.

But please keep on telling bogies, my dear CBT friends, as this seems to make you happy.

I have looked things up in the new DSM 5, written by Prof CBT himself, and I think that CBT -- ism is coded as Complex Pinocchio Disorder, with a high prevalence in a small area in London near the Thames and a small area in the eastern part of the Netherlands if Mr. Google is right.

By the way, does anybody know if there is any treatment for Complex Pinocchio Disorder? Please let me know if you do.

And if you are desperate to find out what the criteria are for this disorder, then please watch this short but superb video.

"Plenty of people are still dying of diseases which other people do not believe." (Dr. M.N.C. Dukes).CBT and GET for ME: "There is no nonsense so gross that society will not, at some time, make a doctrine of it and defend it with every weapon of communal stupidity."

Robertson Davies

THE NICEGUIDELINES BLOG VERSUS THE NICEGUIDELINES

These are NOT the NICEGuidelines. This is "The NICEGUIDELINES BLOG." What are the differences:

The NICE Guidelines are biased publications based on the GOBSART (Good Old Boys Sitting Around a Table) approach.

This Blog however is not only evidence based but also uses critical reading to judge papers and articles. I also use common sense and listen to others. And finally I read both psychiatric and medical evidence and opinions from around the world to come to a conclusion.

I’m not sponsored by anybody or paid by whatever company as seems to be the norm with many psycho people who publish the same article almost on a weekly base.

So if you value an opinion, formed as a result of participating in many ME activities, for example being bed bound for years, you have come to the right BLOG. All these activities have allowed me to form an opinion as a Doctor and as a Patient. And that is important as the voice of the latter is discarded by many including NICE.

If you don’t read this blog, you will miss out on “accredited” medical education. If you do read it, you may actually become a doctor who doesn’t stop thinking or forgets to ask critical questions. Many good things, including satisfied patients are at your command.

So, if you arrived here for the straightforward GOBSART approach, I will disappoint you. If you are interested in forming your own opinion about ME, and other interesting things, read on!

About Dr. Speedy.

I am a Family Physician or GP as it is called in Australia or the UK. I am also an ME patient unfortunately. Bedbound that is. So at the moment I’m in private practice so to speak. I’ve got only one patient, ME, or is it me?

I graduated as a doctor a long time ago, and I am the founder and editor of The NICEGUIDELINES BLOG, an internet based ME BLOG that is devoted to critical reading and cheering you or ME up.

I have the following conflict of interest: I would like to get better and see that the wasting of public money on CBT (talk therapy for a neurological disease, really helpful) and other silly therapies for ME stops, and will be used in better ways.

My goal has always been to help, and if possible, cure patients. With this disease you will soon find out that many psychiatrists and psychologists are only in it to make money and get their name in the spotlight. And what happens to and with the patients is irrelevant.

I stand to benefit both mentally, physically and also financially if this silliness would stop, and I would get my health back, and I can go back to work and have a normal life again. Please evaluate my postings with this in mind! And remember, there are also (lots of) psychiatrists and psychologists who haven’t switched their brain off.